Sunday, August 12, 2012

happy endings

WARNING: this post lacks hope and happiness; if you don't want to read, I understand.

The thing that I am so obsessed with right at the moment and seems difficult to get past is this, very simply put, happy endings. I feel like everyone else gets them and we didn't. I feel like a victim, stuck in a bubble that I can't pop. Trust me I tell myself daily, focus on the positives, let those overwhelm you, not the crap. But, honestly right now, I can't. I just keep crying to myself thinking, why us? Why again? Why didn't we get our happy ending? Is this a life lesson for me, for all of us? Am I not learning enough or doing enough so I "needed" this? I'll tell you this, I don't want to learn more, grow more, do more, I want to just be flipping happy. Is that so hard? Apparently it is. Apparently having one child with Down Syndrome wasn't enough of a life lesson. I realize that there are far worse things in the world than having two children with special needs. I realize that we were blessed with two typical children first, a boy and a girl. And what more could I ask for? Why am I greedy and wanting more? Shouldn't I just be satisfied with all the good in my life and let the rest lay as it may? I wish life were that easy. I wish I could just see what I have is a beautiful family and embrace life's challenges with the gusto that I desire. But, somedays it just isn't that easy and in fact seems impossible.

It's tough when those around you continue on and their lives seem to be granted with their dreams and desires fulfilled and you look and think, didn't I deserve that too? Am I that awful of a person that I need extra hills to climb to become better? I stop writing this, thinking, I don't want anyone to know how truly difficult this is, day in day out, to look around and feel sorry for yourself. I despise it, people who do that with their life. Can't stand people who can't get their head out of their own shit and realize the blessings that surround them. And please know that I do. But, right now, this is where I am at. Tired of staring at my new baby and instead of seeing the wonderment of tiny little toes and fingers, I watch to see if his eyes can track me, if he can hear me, if he is strong enough, watching Youtube videos of 5 week old babies and if he is "normal". It's obsessive. There is no other word for it. If you haven't been there you don't know, and unfortunately I have before. Known before, the pain of milestones passing and missed, the pain of your two year old not speaking and still eating pureed foods and bottles. Watching others at a park simply climb and explore with ease while ours can barely stand...it's heart wrenching. Most days I focus on how he can do so many things, like giggle and smile and love and it does fill my heart, because in life the simple things really do matter the most. But, in our world, day to day, it weighs heavy. The reality of his limitations, the dreams that slowly die. I feel guilty writing that, as if to say Nolan isn't "good enough". And so my anger comes, pissed that I can't feel badly, pissed that I can't stop comparing, pissed that I can't just be happy with my son in all ways, all of the time. But, it's the truth. And the saying, "Truth hurts" well it's true.

I spoke to a mom online a week ago about losing her 2nd child to a rare chromosomal abnormality, she has a living child with DS as well and I asked her point blank, "is it easier to lose them?" Meaning was it easier to lose her child or live with a child with struggles? Her answer was honest and I so appreciated it, she said, the diagnosis was harder for her then the loss. And that I would think is true. You see, having two children with a diagnosis, I lose the biggest thing I have at the moment, the hope of having a typical child again. Seeing them develop and grow and talk. I so mourn that, am dying to recapture it. Thinking I MUST have that again. I can't believe that I don't and won't. I can't be around anyone pregnant. My favorite blogger recently discovered she was pregnant and announced it online, I am so jealous I can hardly breath. I want to be pregnant again, dreaming of this new life. Dreaming of that typical baby and how quickly they surpass all things and slip into independence and growth. I miss that terribly. So, to imagine my favorite inspirational material, now pregnant, it's awful. Mainly because I have these conflicting, unpretty thoughts about how I want someone with me on this journey, but then I stop and realize that means their dreams will be unrealized as well, and who wishes that on their friends. It's so complicated, messy and just not good. I wish it were simple. That I could see the reasons and meaning and understand the need for this in our lives. I wish I had faith, hope and gratefulness all the time, to pick me up when I am fallen. But, right now, I feel down, in the dirt and coming out seems nearly impossible. It isn't something I can talk to my friends or family about, they all have well meaning phrases of support, but in reality very few people can remotely understand our specific experience and that is so isolating.

When I first became a mom to a child with special needs, I remember people saying it was too hard to have friends with typical kids. I thought that was ridiculous, why would I need new friends? Then, as new babies are born typical, as they complain about daily challenges raising typical children, or complain about simple things like potty training, you find yourself understanding. Understanding that their life is simple, easy and taken for granted in so many ways that they will never know. And you aren't about to be the downer that tells them how hard it really is. You want to hold your head high, smile and relate and be "normal". Don't want to stand out as "different" or less than or be pitied by anyone. What is worse than that? Being the family that people sigh a relief that they aren't. But, of course they do, they think you are extra strong because you have two children with special needs. I am not extra strong, or brave, or extraordinary. I am a mom, just like you and struck twice and what else am I to do besides get up and keep going.

It's what also is difficult about a birth diagnosis, because you want to be sad, cry and be bitter, but you still have a precious life in your arms. People don't grieve with you because they don't know what to do. They don't know if they should say, "I'm sorry." Is that offensive, mean to your child that is here? Some say yes. Some say no. It's different for everybody. For me, I need time to grieve, this time, more than ever. I need to know that it's ok to grieve and cry and doesn't mean I don't love EJ or Nolan, of course not. I love them intensely and adore them the same as our others, truly. But, I grieve the loss of not having a typical child again, that is after all what we all wish for. But for us, our happy ending is still in the making and one day, one day, we will have it, right?

12 comments:

One day you will have it, and so will I. I'm thankful you had the courage to be real, but at the same time I am sorry that your life is so hard. No one should have hard days and especially a hard life, your very courageous. I can't totally relate, since I don't have special needs kids, but life has been pretty hard for me these past several months and I'm sorry it has been for you too. I can relate to so many things you said. Xx x

I just want to say that you truly are brave. You wrote so many words that I wish at one time I could've said myself. I grieved for so long over our brith diagnosis. I couldn't say the words Down Syndrome without crying. I know I'm not in your exact situation because I only have one special needs child. I have a 10 year old and then my 16 month old son with Ds. The hard part is that my husband doesn't want any more kids, so the thought of never having a typical child again is so hard for me. You are not a bad person and you need to take as much time as you need to grieve. Letting yourself grieve will only make you a better Mom for all of your kids. You are not a bad person for feeling this way! You get up everyday and take care of those beautiful kids of yours, even on those days when you just want to crawl under a rock and die. You will get your happy ending, it's just different from the one you had imagined for yourself. Hang in there Momma! I promise you it will get easier! <>

I just want to say that you truly are brave. You wrote so many words that I wish at one time I could've said myself. I grieved for so long over our brith diagnosis. I couldn't say the words Down Syndrome without crying. I know I'm not in your exact situation because I only have one special needs child. I have a 10 year old and then my 16 month old son with Ds. The hard part is that my husband doesn't want any more kids, so the thought of never having a typical child again is so hard for me. You are not a bad person and you need to take as much time as you need to grieve. Letting yourself grieve will only make you a better Mom for all of your kids. You are not a bad person for feeling this way! You get up everyday and take care of those beautiful kids of yours, even on those days when you just want to crawl under a rock and die. You will get your happy ending, it's just different from the one you had imagined for yourself. Hang in there Momma! I promise you it will get easier! <>

The 'best' advice my mom gave me a long time ago was 'who ever told you you were going to be happy all the time?' And I have never forgotten her for it. At first I hated her for it and thought she was such a downer but then slowly over time I began to realize she was right. No one ever promised me happiness or happy endings and I began to see her words as a blessing and they began to make my life alot less disappointing. Happy is relative and things are not as they often seem. Our friends with the happy endings and the 'perfectly normal' life, they have their struggles too. We cannot know what goes on in their worlds or the chaos that may exist with in them.

What you are experiencing is heart wrenching, gut wrenching and I hope you can find someone in your circle to help you bear this pain. No one here will judge you for your thoughts and feelings so let them flow. In a way think of our little one's with Ds. One step forward, ten steps on pause or backward, and then forward again. One step at a time, be kind to yourself you are a mother of a newborn which in and of it's self is hard work. Try not to focus on why me but rather why not me to love this beautiful baby boy blessed to me. Thinking of and praying for you.

I just wanted to tell you how much I feel for you, I am sorry you are going through such a difficult time...If I was in your shoes I would be feeling the exact same way. I hope as time goes on things get better...Thinking of you...

You and you kids are so beautiful. Hope things get better for you. I don't think I would have the courage you have. Hope you have a good support system and take care of yourself first, it's very important.

Grace, I'm so proud of you for letting yourself feel how you feel, and not apologizing for it. I hope you'll continue to write and purge your thoughts (whether or not you share it)...it's like therapy. I admire your strength and honesty. Keep your head up.

Grace you never have to apologize for being real. That is you! If I read a post about how it was all okay with you, I would get some moms together for an intervention. Your ability to be honest with yourself and others is what will be your, well, saving Grace. Head up or down we all love ya!

Grace, my heart is fractured, the same heart that you helped mend not long ago when I thought that happiness would elude me indefinitely. For you, I am sad and angry and am asking, what the hell?! I find solace in knowing that this is NOT your ending and that happiness will find a way to peek out from behind the gray clouds and shine on you again. I know it will.